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I Wear My Stripes For Rare Disease!

Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.

Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.

Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.

It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.

Thank you for prayers, caring & sharing!

I wear my stripes in support of Rare Disease!

Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!

Thank you Jesus!
…and by His stripes we are healed!
🙏💪🏻✨❤️‍🩹
God Bless!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy

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See full photo

I Wear My Stripes For Rare Disease!

Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.

Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.

Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.

It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.

Thank you for prayers, caring & sharing!

I wear my stripes in support of Rare Disease!

Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!

Thank you Jesus!
…and by His stripes we are healed!
🙏💪🏻✨❤️‍🩹
God Bless!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy

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East Meets West: How Alternative Therapies Complement & Help my Sjogren's Journey

As a Reiki Master practitioner and a student of yoga for 25 years, I have personally benefited from complementary modalities over the years -- long before my Sjogren's diagnosis (a serious, complex systemic autoimmune disease).

Before I launch into how I have personally experienced positive benefits from complementary therapies, remember that you have full autonomy over your body. What works for me may not appeal to you, and/or work for your body's specific needs and your symptoms.

Listen and pay attention to the signs and messages your body sends you. Do not push your body to the point of extreme pain, or allow any practitioner to tell you what you should do with your body. You know your body the best!

As a Sjogren's patient, I deal with a myriad of complex systemic issues and also have severe spinal stenosis so I deal with physical limitations. In the past, I hiked long distances but I can still enjoy outdoor walks in nature albeit my walking mileage is reduced. I am also a former dance fitness instructor so dancing and movement have always brought me great joy in my life.

While I also take prescription medication for Sjogren's and see multiple Western healthcare specialists, I also listen to what my body needs outside the parameters of Western-based medicine. I see a Traditional Chinese Medicine acupuncturist and I have found pain relief and ease of my symptoms through regular acupuncture sessions.

If acupuncture sounds too invasive or you dislike the thought of needles (although acupuncture needles are small and painless), there are other modalities such as gentle massage, Reiki (which can either be done hands-on or hands off), Bowen therapy, craniosacral therapy, EFT/tapping, myofascial release, aromatherapy, sound healing, and yoga nidra.

Reiki is a non-invasive healing modality. Studies show that reiki can help reduce stress and anxiety, and ease pain and help relieve symptoms related to chronic illness. Like acupuncture and massage, it is recommended to have Reiki sessions done on a regular basis.

While I personally tout the benefits of yin yoga to stretch my connective tissue and lubricate joints, I understand that yoga is not an option for some patients based on their limited mobility.

While other yoga styles focus on the muscles (Yan style of practice), yin yoga is a passive practice that holds yoga poses/stretches between 3 to 5 minutes. Chair yoga is another option if you are unable to sit or lie down on the floor.

Last year I added qigong to my daily self-care routine. Qigong is a gentle movement practice rooted in Traditional Chinese Medicine. It coordinates breathwork and meditation as you move through a series of slow-paced body postures and flowing movements. Qigong is very relaxing and as someone who deals with bouts of anxiety, it helps ground me and release tension and stress.

If interested in exploring alternative therapy modalities, along with Western medical care, I encourage you to be curious and ask yourself what sounds or feels good to your body.

Discuss with your doctors before starting a new movement practice such as yoga or quigong. Vet practitioners and research them online. Make sure they are certified and licensed practitioners. Read their client testimonials and reviews. Ideally, they should have experience working with clients who have a chronic illness.

There is no "one-size-fits-all" when it comes to exploring non-Western complementary therapies. If one doesn't work out for you, try out a different modality or practitioners. Look into community-based acupuncture centers which usually offer lower rates or research your insurance plan to find out if acupuncture is covered (some plans sometimes cover massage therapy).

Self-care is not selfish and dealing with a chronic illness can drain us not only physically but emotionally and mentally. I have personally benefited from looking outside Western medicine to help ease my physical pain and bring me comfort and peace throughout my chronic illness journey. I encourage you to find what works for you and remember you are not alone in your journey.

#sjogrens #autoimmune #Reiki #Acupuncture #massagetherapy #traditionalchinesemedicine

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Sick again

I’m sick. Again. Face redness, swollen glands under my jaw, mouth sores, pain, fatigue, brain fog, mood swings, headaches, loss of appetite, sleepless but so tired - sick. I see the rheumatologist in two days, but I have little hope of getting any more answers. It’s exhausting to be sick all the time. Although, I prefer the predictability of past times of consistent illness to the unpredictability of the flares I experience now. I need answers so that we can start treating the illness instead of just the symptoms. I’m so ready for true physical rest.
#Undiagnosed #autoimmune #Lupus ? #sjogrens ?

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Mount Calvary by Melanie R.

Mount Calvary

They don’t mind to see me-
my blood and body thinned.
My bruises of the beatings,
physical weakness I’ve been in.
Wrapped up in all their doings,
scoffing-
walking by.
Obscured to all the suffering,
the price –
the prayers I’ve cried.

I’m up here on my cross,
I wish that they could see,
the moments that I suffer through the pain…the misery.
Have they come to mock me?
Rather than reprieve?
Do they like to see me suffer?,
with every breath I breathe?

Said if I was anointed,
meander my way down-
If I’m a chosen one of God,
put on my rightful crown.
They plundered and they pilfered,
all that I had left…
and only came to watch me die
atop this mountain cliff!!

No broken bones
but wounds to bear.
Water and blood,
A scar formed there.
A symbol of true suffering
brought down upon The Mighty King.

It’s done –
it has been finished!
His story that will reign!
If we share in of His suffering,
our glory’s shared in pain.

He kept His scars
hands, feet, and side
to prove His love,
His sacrifice.

To all my friends,
it won’t be long.
Put on your cross,
and just hold strong!
Trust Jesus has the victory,
saved since that day on Calvary!

#ChronicIllness #ChronicPain #MitochondrialDisease #sjogrens #BackPain #RheumatoidArthritis #MightyPoets #Christians #MightyTogether #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies

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